Good news: your story is not yet locked in

by Carolyn Thomas    @HeartSisters 

I’ve been thinking about storytelling lately. I encounter a lot of patient stories from my Heart Sisters blog readers here, as well as from the women who raise a hand during my Heart-Smart Women public presentations. (I’ve learned that even the briefest of questions often hides a story behind it). I also tell stories – both my own, and other women’s. A heart patient’s story often kicks off with a profound this-can’t-be-happening-to-me sense of disbelief as we try to make sense out of something that makes no sense at all. Telling the story to others helps us do this at first. “How did this happen?” demand our worried family and friends while we lie there, overwhelmed – and thus our storytelling begins.

I’ve also learned that the way we tell that same story to ourselves and to others changes over time. And as NPR broadcaster Glynn Washington (of Snap Judgment) said in a recent interview, when you start changing your story, you change the storyteller: 

“If you ask a person on the street what their own story is, they’ll often tell you about something that is rooted in trauma, because they haven’t gotten past it yet.”

Glynn knows about traumatic stories: his parents raised him as part of an apocalyptic religious cult. He recalls a childhood marred by frightening episodes like being locked in a dark closet, terrified and screaming for help. Glynn’s stories were true. They happened.

But he no longer feels the need to keep telling those stories.

What’s wonderful about your own personal narrative, he adds, is that the story is not “locked” forever:

“You can go back, and grab that little person’s hand – and you can end that story wherever you want to. You can go back and take yourself, not locked and screaming in the closet, but where you want to be. People can drop their stories, and then pick up another one. It changes the person telling that story. It changes you!

“I can’t emphasize enough how wonderful it is to take back your own story.”

My own “widow maker” heart attack story was pretty dramatic. Stories of surviving a medical misdiagnosis are always dramatic. I still cover its key points at the start of my Heart-Smart Women public presentations because it helps to put a human face on a whole pile of surprising facts about women’s heart health that I’m about to unload onto my audiences.

But I rarely even think of that 2008 story anymore during my regular day-to-day life. It was a horrible yet temporary story. Many of you freshly-diagnosed heart patients reading this might find it impossible to believe that you’ll ever be able to view your cardiac event stories like this.

(These days, the temporary story I’m far more focused on involves a painful pulled calf mauscle – a story that, really, nobody is that interested in hearing about. But I know that this story too will change.  Soon, I hope. . .)

As in most crises, we often need to tell and re-tell dramatic health stories in the early days and weeks immediately afterward. The need to do this lessens over time (although some people continue to repeat their story as if it happened yesterday).

The other reason I’ve been thinking about how we tell stories in general began with an experience I had in a local coffee shop recently. I was reading The Globe and Mail and enjoying my coffee, as I like to do on Tuesdays after walking my darling granddaughter Everly Rose to daycare in her stroller. At the table next to mine sat four older (i.e. older than me) women. They were telling stories about their respective health problems (sometimes, all at the same time). They did this for the entire hour I sat next to them. They clearly weren’t listening or responding to each other’s stories. Instead, they seemed to be waiting for a break in any given story so they could jump in with their own dramatic updates. What the doctor said, what the other doctor said, what the tests meant, here’s a long list of all my symptoms, and your story reminds me of my cousin Helen’s far more interesting story. . . 

I know that aging can often bring with it more ailments, more distressing pain, more health issues that provide ample fuel for storytelling.

But I don’t want to end up like those women, no longer capable of going out for coffee with my girlfriends without rehashing endless health complaints (or, as my Santa Barbara friend Dave calls them, “the organ recital”).

And these stories are likely not helping the storytellers. Social psychologists like Dr. Martin Seligman, for example, believe that complaining can actually worsen physical symptoms by focusing our attention on them.

As Dr. Barbara Keddy (professor emerita at Dalhousie University and a heart attack survivor herself) warns those of us who need to keep repeating our stories:

Reliving past injuries of a physical or emotional nature only reactivates the nervous system.

“Instead, it is more important to recognize our reactions rather than the specific events related to the trauma.”

I wrote in Chapter 9 of my book that my own heart attack story is now very different compared to those early days, weeks and months almost 10 years ago.

That story of the sudden acute drama of a misdiagnosed heart attack has been far overshadowed by the relatively quiet reality of just living my life – a life that now includes ongoing and debilitating symptoms of a secondary chronic illness: the cardiac diagnosis called coronary microvascular disease (not to mention my – ouch! – pulled calf muscle, of course!)

Changing my story doesn’t of course change what happened back then, but here’s how telling that story has changed:

“Some days, I feel a wee bit surprised that I’m still alive.

“Very gradually, almost imperceptibly, month by month, I am starting to feel less hypervigilant. I am no longer as afraid as I once was that I’ll die in my sleep tonight. I am no longer convinced that every significant bout of terrifying chest pain means that today is the day I will have another heart attack. (It might be today, but I just can’t be absolutely sure anymore.) I now review those years since 2008 and ask myself: how many hours/days/weeks/months/years did I focus more on fearing what might happen than on what was actually happening?

“I am no longer wary of settling into what some people like to call ‘the new normal.’ For a long time, I’ve tried to resist using that phrase, mostly because part of me, the crazy-out-of-touch-with-reality part, still wants to embrace the fantasy that I’ll wake up tomorrow and maybe none of this will be true after all. And then my life will indeed be ‘normal’ once again.

“It occurs to me now that this is how my life might actually be from here on in. Based on results so far, it’s highly likely that I may never return to my pre-heart attack self. And I know that it’s taken me a long time to arrive, skidding heel marks and all, at a realization that perhaps has been blindingly obvious all along.

“I can either choose to focus on all that I’ve lost, or I can focus instead on what I still have.”

Just as Glynn Washington has observed, changing my story has changed the storyteller. Like you, I‘m creating  – and changing – my own narrative these days as I try to “take back my own story”.


Q: How have you changed your own story?

See also:

More about my book A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press)

The  2018 Heart Study from Canada’s Heart and Stroke Foundation called Ms. Understood (filled with compelling stories of real heart patients, including one I wrote more about from a woman named Nancy Bradley, whose misdiagnosed heart attack was freakishly similar to my own – except hers happened 10 years later!)

I Don’t Want to Talk About It

How Our Girlfriends Can Help us Get Through the Toughest Times

Do You Think Too Much? How Ruminating Hurts Your Heart

Get Over Yourself: How to Stop Boring Others with your Heart Attack Story

Why We Keep Telling – and Re-telling – Our Heart Attack Stories

16 thoughts on “Good news: your story is not yet locked in

  1. Nice to know about your experiences. These heart ailments give anybody a huge jolt when they strike for them first time. The lucky ones survive to tell the tale later, and there are those unfortunate ones like a father of a friend of my son, who could not survive the first ever attack. He and his family in fact misconstrued the symptoms as a case of acute indigestion or acid reflux.

    Liked by 1 person

    1. Thanks for your comment. That is such an unfortunate story about your son’s friend’s Dad. It reinforces the importance of the patient taking cardiac symptoms seriously when they hit – any symptoms that just do not feel “normal” to them.


  2. Thank you for writing this. Story-telling and trauma is tricky business. Observing the story helps our nervous system recover, as Dr. Keddy suggests. Observation is possible through mindfulness, knowing that you are visiting the past while staying rooted in the current realities. Not all evidence-based trauma treatment use mindfulness language but the techniques are consistent with it. The other piece is putting tools in place, for example, relaxation breathing so that we can tolerate the visit and not escape or avoid it.

    Liked by 2 people

    1. Thank YOU, Elizabeth. I loved your statement in your own blog post about storytelling (“The stories we tell may either help or amplify our suffering”) – which I’ve already borrowed in my response to Dr. Barbara Keddy (below).

      I think that storytelling is inevitable (also a helpful and important facet of acceptance) in the early days post-diagnosis/treatment, or when things change and the prognosis worsens.

      It’s tricky business indeed, however, as you say, since sometimes “visiting the past” turns into setting up a permanent residence there. I’m reminded of an unusual conversation with my mother decades after my Dad’s death, when I asked her one day why she’d said NO to an invitation from longtime family friends to join them on a little holiday to Atlantic City: “Why would I want to do that? It wouldn’t be the same without your father!” she sternly explained. That’s living in another kind of past, pre-trauma, before life as she knew it ended.

      Liked by 1 person

  3. Hi Carolyn, just want to thank you again for your blog — just ordered your book and can’t wait to receive it. I received the first of my two stents three years ago, thankfully missing a heart attack both times, and I lead a monthly support group for cardiac patients.

    This post is very useful for me because I’m speaking at a ladies’ brunch next month at a friend’s church and my topic will be “Women’s Hearts: Broken, Bitter, and Beautiful.”

    I intend to speak about both physical heart and emotional/spiritual heart issues, and how they are connected. Naturally I’m still putting my talk together but lately I’ve been considering bitterness (and recognizing that I might just have some of that in my own heart!) I’ve known women, especially older women, who are bitter about their lives and how things didn’t turn out the way they planned. (And there are biblical examples of this too, such as Naomi in the book of Ruth who ended up as a childless widow and told everyone to call her Mara, which means bitter, instead of Naomi, which means pleasant.) It could be that at least some of us rehash our stories out of bitterness. I have seen that bitterness often comes from a sense of loss and/or a feeling of being deceived or cheated somehow. Some people’s stories that you’ve told on your blog have touched on this.

    I once heard a great sermon on offenses and I remember the speaker said that concerning where you’ve been offended, “don’t nurse it, don’t curse it, don’t rehearse it.”

    Repeating our stories of trauma is a way of rehearsing it, over and over, and as has been said here and other places many times, this only hurts us again and again. Talking about it does help with overcoming the initial trauma, but we need to become aware that there is a point at which it starts to do more harm than good. Then we need to let it go and release it and stop carrying it around like so much crippling baggage, and move on — to embrace and celebrate the life we have, even with its limitations in “the new normal,” as you put it.

    In my support group, I have watched as patients come for awhile, then for whatever reason they stop coming. Some only come once. I think some of them stop coming because they no longer feel the need to have support. After awhile you just have to get past the cardiac intervention and just start living again, and that’s what they do. A few come regularly when they can — some have ongoing issues that cause them to really need support — but in all honesty, very often in the meetings we just run out of things to talk about. You can only talk about your latest checkup for so long, and we end up talking about other aspects of our lives, like hobbies or families or whatever. I’ve come to think that we just need to celebrate life together on a regular basis, so this month we’re going out for a spaghetti dinner instead of meeting at the hospital.

    Thank you again Carolyn for helping us all on this journey to healing and wholeness in the shadow of a serious health issue!

    Liked by 1 person

    1. Hi Meghan and thanks so much for your comments. I just love what you wrote – so many quotable quotes, e.g. “Don’t nurse it, don’t curse it, don’t rehearse it”. So perfect for this particular storytelling topic. Your upcoming talk (“bitter”) really made me think of those older women at the coffee shop, and I think that’s what struck me while observing them for an hour.

      I love your spaghetti dinner plans this month! There’s lots of research on the natural life cycle of support groups that confirms your own observations e.g. “Discover. Join. Leave” (this one’s about online groups but might ring a bell for yours, too). Thanks again!


  4. I am grateful for all of these conversations. When we can empathize with each other – and walk fearlessly toward more positive solutions, we are all better equipped toward an outlook of ‘what’s right’ with our health.

    Liked by 1 person

  5. Well said Carolyn. I’m a Brave Heart Survivor. Let’s try to engage in providing information for those who are fearful and move forward with wellness expectations & gratefulness.

    You provide a service women can tap into, which looks at the glass with solutions. 👏🏽👏🏽 Well said! Thank you❣️

    Liked by 1 person

  6. I think possibly you’re missing something in the scene of those women talking over each other about their health issues – validation of their experiences. No, they’re not going to get it like that. But if they haven’t had their feelings about their health issues accepted and validated by someone emotionally important to them, they’re going to keep trying to find that acceptance elsewhere. Clearly they don’t know a healthy way to do that, so they choose the next best thing, talking over their friends. Or possibly they just don’t feel they have importance except as sick people receiving attention from medical personnel.

    I’ve had traumatic medical experiences that remain with me in both positive and negative ways. They shape the person I am today – make me more wary but also more understanding, more knowledgeable and also more empathetic of both patients and caregivers. I don’t see this process as waking up one morning and deciding to make the best of what happened to me and turn off the negative feelings. Rather, it’s been a journey of thinking, talking about it to balanced, intelligent people, research, and acceptance of the negative impact on my health.

    That last has been the hardest part, a part I struggle with daily still. But I feel very lucky to have a husband, a friend, and a counsellor who all accept where I am right now, however negative or unbalanced it may seem. And I have a stubbornness, a determination, to keep fighting for my health that I often forget to give myself credit for.

    That’s my journey, different from Glynn’s, different from yours, but just as valid and important. Those women you overheard are in a different part of their journeys, but also just as valid and important. They have just lacked the kind of support, or perhaps self-awareness, they needed to move on emotionally. At least, that’s how I read it 🙂

    Liked by 1 person

    1. Thanks Holly – so many good points raised! I think you’re correct about why those women need to talk about their health stories non-stop, particularly not feeling they “have importance except as sick people”. That belief is ironically why the very act of ruminating over our problems doesn’t make those problems go away.The question for me, then, is how do I live my life so that I can honestly believe there are many other things besides sickness I can focus on that also have importance?

      Liked by 1 person

      1. I have not been writing comments on your blogs of late but I read them every Sunday morning without fail. This one in particular resonated with me as I write my own blogs. I think about these issues so often.

        I recently joined a FB fibromyalgia site where the women (mainly) write non-stop about symptoms. One will post a comment asking others if they have such and such a symptom. Others write in saying “yes” and often little else except to describe it in more detail.

        The blogs I write about issues other than symptoms rarely receive any comments, while the others such as old ones about such things as ‘itching’ or ‘tingling of arms and hands’ (carpal tunnel) remain incredibly popular. I try to push the readers towards other blogs which I consider more productive, but to little avail. It is, like I have thought for a long time this kind of retelling is a support group wherein misery loves company and ruminating runs rampant.

        I realize that writing about heart disease and fibromyalgia are extremely different as one is life threatening while the other isn’t (I have both conditions), nonetheless talking over and over again about symptoms to others does little to come to terms about conditions that cannot be ‘cured’.

        Many of us are privileged enough to be able to afford talk therapy with a therapist or have a spouse or family member who will listen. I DO realize that many do not and therefore use friends or FB to be able to find solace.Therefore, I don’t want to seem condescending, but there isn’t anything more boring or psychologically unhealthy than talk that constantly focuses on symptoms of ill health.

        It is fear and anxiety that motivates us to tell our stories over and over again. I still have night terrors (even after five years post-MI) that I am having another heart attack. Some days I want to tell everyone I meet that I had another bad night. But, I do make a point of not boring my friends with those details.

        Aw, it is so complex. If I couldn’t afford a therapist or have a dear husband to confide in, I would probably tell everyone my tale of woe, over and over again.

        You have raised a complicated issue, dear Carolyn.

        Liked by 1 person

        1. Hello Barbara – it IS complicated indeed! I used to think that if I felt uncomfortable listening to “those” conversations (and really, they are not conversations by any definition), then I was being judgmental and intolerant of the suffering of others. But something you wrote years ago really had a profound impact on me: your quote in this post that starts “Reliving past injuries of a physical or emotional nature…” It turns out that ruminating actually HURTS us!

          I just read an interesting article this morning (this one on a breast cancer patient blog) that said: “The stories we tell may either help or amplify our suffering.” Why would we want to deliberately choose the latter?

          Liked by 1 person

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